A day in the life…….

Menu

Archives

This link above spoke to me as I pondered what Mother’s day meant to me as both a child and a mother.

Mother’s day always seemed more of a burden than a celebration, partly because my mother’s expectations were high. It seemed as though mom was perpetually trying to fill a hole bored deep in her soul by a childhood that was void of abundance, and often lacking in security.

It was only in the months leading up to her death that the bitterness and anger she so often displayed, and that often overshadowed our relationship, were replaced by a gentle acceptance of our love and care for her.

Mom’s last 4 days were filled with immeasurable grace, and I will treasure them always.

My sister received a call from Dad’s hospice nurse last week informing her that dad had gained 3lbs. We knew when dad was initiated on hospice that any significant weight gain could jeopardize his eligibility. In the world of hospice, 3lbs is significant.

As I have written in previous posts, dad has the Cadillac of wheelchairs, paid for by his hospice benefit. The “Broda” chair retails for $3258.00. The hospice provider rents the chair for $7.95 per day. Our plan is to take on the rental cost if hospice services stop. It kills me that I could lease a nice car for less than it costs to provide safe and comfortable seating for my dad. I am in the wrong business.

I saw dad during lunch today. He looked great and ate quite a bit The official weigh in, which will determine if his services will be continued, is scheduled for tomorrow. Given his appetite today, I hope that it takes place before breakfast.

My father’s sister has lived in her home town of Detroit Lakes MN her entire life. She has lived her life as a single fervently independent woman for all of her 86 years. As a child, I would often stay at her apartment when my family would travel to DL to see my paternal grandparents, Aunts and Uncles.

Beginning in high school, I would travel with my sisters to DL to spend time with Aunt Marcy and to visit my grandmother in the nursing home where she resided. The occasional trips became more regular as my Aunt aged. During the past year falls and other medical issues had created a pattern of hospitalizations and subsequent stays at transitional care centers. Marcy’s decreased independence resulted in increasing isolation from friends. She no longer attended church or shopping independently.

On multiple occasions, we urged Marcy to move to St. Paul where she would be closer to family. We never imagined that one day she would say “Yes.” That day came and she is now safely ensconced in a room at the same care center as my dad.

The reunion between she and my dad was bittersweet. Though we had prepared her with information on my dad’s deterioration, she was still shocked and saddened. Though initially reluctant to spend time with dad alone, each day she is becoming more comfortable. The hospice team that works with him has been wonderful about extending their support and ministry to Marcy.

We are thrilled to have Marcy with us at last. Though she misses having her own apartment, she enjoys the daily contact with her brother, frequent visits from her favorite nieces and Sunday dinners at our homes. Today we will take in an Irish concert at the care center, followed by dinner at my house. Home is where the heart of family is (and tator tot hotdish of course). Welcome home Marcy.

Dad has been receiving hospice care for close to 4 weeks now. In the months preceding hospice, dad experienced a significant decline in his intake of food and his ability to express himself verbally. Over the past 2 weeks, he has shown an increase in his level of alertness, oral intake and verbal expression. One word responses have been replaced with phrases or on occasion a full sentence.

Dad showed a similar reaction during his previous time on hospice; something I had talked about here: https://dancingmom66.wordpress.com/2011/08/09/bittersweet-dementia/. So how do we explain this phenomenon? Is it possible that dad’s decline is less related to his disease process than to the lack of stimulation inherent within a long-term care facility? The initiation of hospice brings with it additional personal attention. A pair of home health aides visit 1x per week to “fluff and buff” him. The hospice nurse visits 1- 2x weekly and spends 15-30 minutes engaged with dad. Other staff include a chaplain who brings communion, social worker and music therapist.

Though others might be encouraged by dad’s improvement, I am disheartened. Hospice allows those who are dying to do so with support, comfort and dignity, but in my dad’s case it may just be delaying the inevitable. With improved functioning comes the potential that dad will no longer meet the Medicare criteria for hospice coverage. A weight gain of as little as 2lbs can be a deal breaker, and we are back to square one. The services that have enhanced his life over the past 4 weeks will be ripped away, including the wheelchair that has made the biggest impact in improving his comfort.

Dad is 90 and has unquestionably lived a full life. The love of his life is gone. He can no longer participate in his own self-care. His ability to swallow is compromised to the extent that his food needs to be pureed and his liquids thickened to the consistency of honey. If I were God, I think that I would write the end of dad’s story differently.

I couldn’t resist posting this picture of my dad. The lighted tree was a fixture in my aunt’s small apartment each Christmas for as long as I can remember. It is fitting that dad would now get to enjoy his sister’s tree.

I visited dad tonight. When I get to the home about 6pm, I find him still sitting in the dining room. He and a handful of other residents have been left at their tables. The staff are long gone, probably having begun the task of getting others to bed. I wonder how long he would have been sitting there had I not arrived.

As I come around to the front of dad’s chair he flashes a huge grin and greets me enthusiastically. We go back to his room, and I begin to relate to him the events of the past few days. He listens with rapt attention, occasionally nodding or smiling.

I tell him about a video that I watched on FB earlier this evening; which showed a small slum in Paraguay whose residents fashion musical instruments from crude materials salvaged from the nearby landfill. Dad seems acutely interested as I describe a boy who played a cello made in part from a discarded metal barrel. When I promise to bring my laptop on my next visit and show him the video he responds “That would be good.” His level of alertness and engagement is good tonight. Often I find him tired and minimally interactive.

After a while I wash dad’s face with a warm washcloth and patt some Aqua Velva on his cheeks. Although he recognizes the smell he cannot identify the name. I reminisce out loud my memory of watching him shave and apply the aftershave. He smiles in response. Just then the cat in residence jumps up on dad’s bed and makes himself comfortable on my coat. Dad chuckles in amusement.

My favorite moments with dad are evenings spent quietly in his room. On most occasions the one sided conversation runs out of steam quickly and he begins to doze. It is then that I kiss him good night and wish him sweet dreams. I leave with the lights of the ceramic Christmas tree glowing, and classical music playing on his radio, content in the knowledge that he is comfortable and at peace.

Recently, my brother sent out a copy of my dad’s latest physician’s summary for us to review. While reading it I noted that the MD referred to an 11 lb weight loss. My immediate thoughts went to the possibility that he would now qualify for hospice care. Dad had been placed on hospice in the Spring of 2011 after recurrent bouts of pneumonia. Instead of moving closer to end of life, dad thrived under the watchful eyes of the hospice staff. He “graduated” from hospice after 90 days.

A call to the care center the following day started the ball rolling and dad began receiving hospice care the following day. Dad’s hospice nurse told me that his records showed that he had lost 11% of his body weight over the past 6 months, a fact that seemingly escaped the attention of the nurses at the care center where he resides.

As a benefit of hospice, Dad now has the Cadillac of wheelchairs which provides the positioning support that his previous wheelchair so desperately lacked. Most importantly, he has several additional sets of eyes monitoring his status. There are medications available to be used to provide comfort if dad experiences pain or shortness of breath. The hospice team includes an RN, social worker, chaplain, music therapist and home health aide.

Dad continues to decline both physically and cognitively. On the positive side, he is seemingly unaware or at least unaffected by his physical and mental state and the fact that he resides in a care center. He has stopped inquiring about the welfare of my mom or his siblings. He lives in the moment. A skill that most of us lack. His facial expressions communicate more than his words will allow as he takes in a lighted Christmas tree or an amusing anecdote shared during a visit. For this I am grateful.

My visits are frequent. Each time I kiss him, look into his eyes, say “I love you” and in response hear “I love you too,” I wonder if it will be the last time.

I plan to use this blog to chronicle this experience. There will undoubtedly be difficult decisions to make down the road. The experience is bound to be both ugly and beautiful. However God chooses to write the ending to this story, I hope to remain grateful for all of the moments.